How will people use PrEP? iPrEx users talk condoms, pills, anxiety and relief

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Interviews with participants in the US sites of the iPrEx
study of pre-exposure prophylaxis (PrEP) show that participants who took it mainly
used it as an additional source of reassurance rather than to replace whatever
risk management strategy they were currently using to avoid HIV infection.

There were participants who used it as their sole defence
against HIV infection, but these tended to be the minority of participants who
had never used condoms before they joined iPrEx. There was no evidence that
participants were substituting PrEP for condoms en masse.

The iPrEx researchers conducted 60 in-depth interviews with study participants
in Boston, Chicago and San Francisco. Their mean age was 36; 51% were of white
ethnicity, 43% African-American and 6% other.

Condom use in the interviewees before they joined the study “ranged
from routine to never”, researcher Kimberley Koester told the conference.

Once on PrEP, the participants did not report significant changes
in other risk management behaviours – except for younger participants, who
actually increased their use of
condoms. In most cases it did not lead to increased condomless sex: but it did
lead to decreased stress, fear and guilt.

Testimonies

One African American participant testified that the reduction
of anxiety had been the main benefit of PrEP (all names are pseudonyms):

“Even when I was being
safe [HIV] scared me. I don’t want to say it doesn’t scare me, but less so now,
if that makes sense? I won’t say the anxiety has gone-gone, but it’s not in the front of my head as it used to be, where I was obsessively worried about it while
sex was happening.” - Darryl, 51.

A majority of participants stressed that they did not feel
suddenly freed not to use condoms. One white participant said:

“It’s not like I’m
going to go out and being like, ‘Ooh, bareback now. I’m protected. It’s fine.’
It’s so, so not the case…I just didn’t have the overwhelming stress and fear
and guilt that I would have done.” – Seth, 29.

PrEP certainly held out the prospect of increased sexual
adventure and abandon. But this was not so often acted on. One participant
said:

“I wanted to let
myself be a little more open to doing something…but it didn’t happen. We ended
up having safe sex anyway. I thought it was going to have a bigger effect on
the way I had sex than it was. I kind of just didn’t change my habits very much
except just feeling a little less worried.”

A minority of participants, however, had never used condoms
and for them, PrEP was a potential lifeline. One young African American
participant said:

“I don’t know what I
would have done without that pill. I would probably have HIV right now. Because
I used to have sex unprotected, like I told you…I could be dead right now…the
pill was a blessing to me.” – Charles, 21.

Kimberley Koester said that the current concerns about risk compensation
that had been expressed about PrEP were tending to overshadow a more realistic
understanding of how it was likely to be used and of its protective benefits.

A PrEP user speaks at the MSMGF meeting

“I am the Hispanic, HIV-negative son of an HIV-positive father
who passed away from an AIDS-related illness in 2011,” he told the meeting.

“I decided to start taking PrEP when a relationship with a
partner who is also HIV negative became condomless. It also became non-monogamous, and I wanted a sex life free from fear. I also wanted to take charge of my
prevention in the way HIV-positive people have managed to take charge of their
treatment.

“Ironically I think that the gay community has almost replaced
the fear of HIV with a fear of effective prevention. I think it’s because AIDS
was a trauma and trauma keeps you in a position of anxiety where you are unable
to move…we feel so ‘high risk’ that we fear taking any action that might make
that risk worse.”

He did occasionally worry, he added, that PrEP might end up
just replacing one anxiety with another – “Will we replace the fear of HIV with
the fear of missing a dose?” – but he felt the urgency of the need outweighed this.
“This does not help the young African American men who really are at huge risk
of HIV. “

Besides, PrEP had had unexpected benefits: “One is that I’ve found,
in having to challenge negative attitudes to PrEP on social media, that I’ve
had to become an expert on treatment in the way HIV-positive people have had to
be. I’ve always wanted to show solidarity with my HIV-positive friends and PrEP
has enabled me to do so.”

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.